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Author
Topic: Aids is no longer a .... (Read 5683 times)

I don't like it when people say that AIDS is no longer the death sentance that it once was... sure, I know that it is said to reasure, but why even say this? What the hell is it then.. it is a life sentance that is for sure.. am I off base? I seem to get upset when I hear this or read this...

If you want to start a nucular (in honor of Prez Bush) meltdown here your question is one of the best ways. Congratulations!

In regard to those of us in the USA, Canada, UK, most of western Europe, etc. I agree with you almost 100% -- hearing people say HIV/AIDS is a "manageable chronic illness" without any qualification drives me batty(er). Stating it's "not the death sentence it once was" is technically true -- it's not for many people, but for millions in other countries it is a death sentence and even for a significant number of people on meds AIDS is still a daily battle to live. What irritates me most about these statements, though, is this epidemic isn't even 30 years old yet and until we pass 40, 50, and more years living with HIV no one will know and there is no way of knowing. A cure is not around the corner, either (I'll be more than happy to be wrong).

What is true is for a lot of us living in relatively well-to-do countries and countries 7e9o •which have taken very active roles in treatment and prevention irrespective of profits desired by patent holders, living with HIV is vastly different for most in 2007 than it was for those in 1987 when death rates were still very high. Most of us on these forums belong to the former group because those in the latter often don't have access to the Internet, personal computers, etc. We are a face of AIDS but by no means a complete reflection of the disease in the world.

As you said such statements are reassuring. It is necessary for newly infected and newly diagnosed people, still grappling with the living nightmare a poz test result means for many, to know they have better chances and more treatment options now but to tell them HIV will be a simple matter of swallowing pills daily until they reach a ripe old age is not true -- that may be the case but no one knows or can know.

Some people insist negative thoughts about HIV are counter-productive and we must/can will ourselves to stay healthy, which is an attractive idea and has some merit but with HIV, as most things in life, if your number is up your number is up. I've been around since the beginning of this plague and have seen incredibly healthy and beautiful people shrivel up and die in a few months and watched as others live for years drinking, drugging, and disco dancing until sunrise non-stop who don't get ill or take a long time to get ill, with wide variations. A friend who was close to death most of the late 80s is still alive but looks and often feels like he's 50 years older than he is, but it's his life. I know too many young people who knew they'd never contract something like HIV but did somehow and that makes me very sad. Downplaying the seriousness of infection by the media and society lulls too many into thinking they're immune or even if they become infected it's no big deal, another aspect of the issue. Strange thing is when they test positive it often is a very big, emotionally wrenching deal.

Amen.....Who said, "Death is certain, life is not." I saw that on an episode of Oz but it has always stuck with me. We were not meant to live forever and eventually our number is going to be up regardless. And another favorite of mine..."Tomorrow is promised to no man", not sure where I got that from. I guess what I am trying to say is that something other than HIV/AIDS could always take us out. I'm not trying to be a smart ass but just saying. If you are going to spend your time worrying how will you be able to enjoy life at all?

Well, put me in the other camp, that AIDS is not the death sentence it once was, because largely, qualified for those with access to treatment, HIV infection is a treatable disease.

I don't know why that would bother one so much, especially if your HIV positive.

When there was no treatment or pre combo, the reality of AIDS was attached to a perception of certainty. And I know a number of friend who have indeed died of Aids and some just a couple of years ago. But the reality of today's treatment and knowledge of HIV is so advanced over just 5 years ago, that it is perfectly reasonable to allow our perception of the disease to change with the times.

There is an axiom. Perception trails reality. We base our judgment on experience. When reality is different than experience, such disassociation between statements that Aids, which used to be death sentence, and now is just another manageable disease, is understandable. Especially since HIV has been such a stigmatized disease for any number or reasons.

When one reads that nearly half of all Diagnoses for HIV infection are in fact after AIDS has developed, is really what is distressing to me. That the complacency about HIV infection is offsetting the advantages of what we know today about starting treatment before AIDS occurs, which can greatly enhance ones ability to live a "normal" life with HIV. I really don't think the message of AIDS=Death is the right message anymore. It might be for political reasons and for prevention reasons, but not because of the disease itself. But it is sad that many opinions about HIV are becoming so lax that people aren't getting tested until AIDS develops is unfortunate. But, we have to be aware who aren't getting tested and we have to ask why? I would hope that if one is gay, testing is something that isn't far out of reach. Now that HIV is becoming so mainstream, affecting so many woman and minorities, perhaps the message that the gay community is advocating needs to become broad, reaching perhaps those who are not as aware of the risks of HIV and the importance of regular testing and early detection.

Well, put me in the other camp, that AIDS is not the death sentence it once was, because largely, qualified for those with access to treatment, HIV infection is a treatable disease.

You can be in your camp and I believe optimism is healthy but AIDS is a young epidemic. Given many facts about viruses, retroviruses, and HIV specifically your statement should be further qualified to account for the relatively short period successful treatments have been around (IMHO obviously). So far no one has gotten to the 30 year mark of known infection and very few have been on HAART for 20 or more years. I'm not trying to rain on your parade, I'm suggesting you keep an umbrella with you. You're right -- AIDS is not the death sentence it once was but we have no guarantee our parole won't be revoked with little or no warning.

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Now that HIV is becoming so mainstream, affecting so many woman and minorities, perhaps the message that the gay community is advocating needs to become broad, reaching perhaps those who are not as aware of the risks of HIV and the importance of regular testing and early detection.

The messages are now tailored for target audiences since with HIV one-size-doesn't-fit-all. The epidemic was ahead of the learning curve 10 - 15 years ago and HIV spread to new communities and will continue to spread to/among identified at-risk groups and yet-to-be-identified groups. A key component of education is to make the lessons accessible to those at risk and those newly infected. A Black woman in a support group of gay men may get a lot out of it but she might get more from a group of women or even only Black women who might have more in common. An infected teenager isn't necessarily going to feel comfortable in a group of adults and an uninfected teenager will almost always discount anything adults have to say (often with very good reason -- I know I did often... and still do).

Peer education, unlike abstinence only, programs have proven track records beginning with gay men in the 80s and other groups after them. It's unfortunate infection rates among gay men decreased steadily for several years but began to rise among younger populations of gay men, especially those of African-American or Latino descent, who were not target audiences until infection rates were noted. AIDS in rural America was largely ignored until recently and now many rural and urban populations are caught in a battle for funds which were not sufficiently increased to accommodate the "new face" of AIDS when it was acknowledged.

One reason I am cautious in my optimism is we've learned since the 1950s and 60s when polio and TB and other diseases were "eliminated" that crafty nature sometimes has other designs. We find new pathogens unexpectedly popping up and old ones making remarkable comebacks in spite of our pharmacological weaponry. It's sort of like we declared conquest of a pathogenic Iraq and have to deal with old and new terrorist pathogens emerging in the face of our medical hubris... or something. I also take into account how some viruses actually lie dormant (unlike HIV which is usually battling the immune system from day one but "symptoms" occur only after the body is losing the battle) in different hiding places and become active again or newly active 20, 30, 40 or more years after initial infection. We know HIV infects just about every organ, from the largest (the skin) to the smallest (whatever it is.. my pinky finger maybe) and we know current HAART affects HIV primarily in the blood but not the gut or liver or lymph nodes or CNS or brain or most other organs so concluding HIV may have a trick or two up its sleeve seems prudent to me. I'm not going to lie awake all night obsessively worrying about it or give up living because that bastard virus is destined to kill me but I haven't sent out invitations to my 80th birthday party in 2035 yet, either (actually I'm fighting with the stationer over the color described in the brochure as emerald green which is clearly puce and once that's settled they'll print the first 50,000 to be sent to older people who may be dead before the event and want to gift me early).

I'm very sleepy and if you're not you might give your pulse a quick check to insure you didn't die from boredom before reaching this sentence.

In verbiage, incoherence, and just plain inchoate,

JA

P.S. Shut up. I can't help it if no one else in the world writes as execrably as I do. You know who you are... and I dare not finish that thought.

I don't like it when people say that AIDS is no longer the death sentance that it once was... sure, I know that it is said to reasure, but why even say this?

It is said because it is the historical truth. For at least 15 years almost everyone with AIDS did indeed die. I personally knew over 150 people who died from complications of AIDS. History cannot be denied.

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"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Manageable? That's a joke, only those that don't have HIV, calls it manageable. I will agree it is not the death sentence now as when it first started. Will I die of an OI, because of AIDS? More than likely. I may also die of a heart attack, car crash or anything else. Maybe old age if I'm lucky.

No matter hwo much people get mad or angry or scream it - people are going to use these terms like managaeable, chronic, death sentence, unmanagaeable, etc. There will never be consensus - especially as treatement improves and for others it does not and prognosis are very unique for each person. There are plenty of phrases that offended me, but now I don't even think twice. Trying to control language or views when people genuinely believe these things from their perceptions is their right. No one is going to control language IMHO.

Let everyone eat cake - we're all in this together no matter what!

Peace

Logged

"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

The idea that AIDS is a death sentence combined with the fact that our mortality is guaranteed no matter what the cause, the issue itself that we shouldn't call AIDS or HIV infection a death sentence is a fascinating look into our psyches dealing with the fact that we have a disease that probably will be the reason or contributor to our ultimate demise.

I guess its all a degree of expectation of what our remaining time will look like. Personally I am hoping to survive long enough to where some of these new treatments that may actually hold HIV at bay, making HIV less of a threat to being the cause of our demise. I have been poz 3-4 years. A relative Newbie. And Pre Med. Like most, the adjustment to being POZ was to put it mildly a mind fuck. But now, with the treatments available to me, with the research progressing and with lots of treatment options in the pipeline and with my specialist who provides a view point that my first treatment option may last for several to many years, my view is trending optimistic for my long term survival. This being my perception, and understanding the painful history of HIV and AIDS, and the pain experienced by long term survivors who contribute to these pages, I conclude that it is not wrong to have a new realization or current perception that HIV is not the Death Sentence it was and that analogies to survival akin to managing diabetes may be in fact the current modern day case. And just to add, I'm not naive about survival. While I can't say I've seen hundreds die as some have had the misfortune to go through, I have lost friends to HIV. I know it has been a tough road and suffering has occurred and is ongoing. I am also in my 40's, so my view point on survival may just be aligned with a middle aged view towards my mortality anyways. Essentially, I'm surrounded by people who are not be afflicted by conditions associated with middle age. Many of them, diabetes, which will also trend to shortens one life as well. And with having my own father dieing of heart failure in his early 40's, I think I've always had a view of my mortality that is weather its HIV or Heart disease, Cancer, Diabetes, its going to be something.

yo Rod, I'm definately poz so don't throw me in that group that doesn't have the right to call it managable.

Your experience is your own. Be careful how you project it on others.

You risred1, aren't managing anything. Until you've had your ass in the hospital for months and until you start taking meds everyday, you will then be qualified to speak on the matter. Until then, don't tell any of us that take meds everyday and worry where the money is going to come from to pay for them, that this disease is manageable. You try to make it sound like it's a walk in the park. You sure have a rude awakening coming.

I think it's more like a "chronic, manageable" house of cards that could fall down at any time. Yeah, I feel great, and my CD4 count has tripled, and my viral load is almost undetectable, but one false step -- a few missed doses of medicine, an opportunistic infection, a sudden need for chemotherapy -- and months of gains could be lost in a few short weeks. All of my progress is thanks to HAART, and if HAART fails, I'm in serious trouble. And even if HAART is successful, what will my liver, heart and kidneys look like in 35 years? Nobody can answer that question, because nobody has been there yet. Can we expect a 23-year-old male starting HAART in 2007 to have a functioning liver when he's 70 years old?? I hope so, but I don't see any guarantees. I think "death sentence" is too harsh an adjective for post-1989 AIDS, but I think "chronic" and "manageable" are WAY too sweet and syrupy to describe the obstacles that we face.

I think we all realize we're mortal and in one fashion or another life ends, whether it's an AIDS-related OI or a Mack truck plowing into the back of your VW beetle.

Does AIDS=DEATH still? In most of the world it does, I think, and in educating the uninfected it's not incorrect to make the statement, IMHO, and stating "HIV infection is a chronic manageable illness" to that audience is irresponsible, again IMHO.

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For me I'm thinking, AIDS is always what you make of it.

AIDS is certainly what you make of it in one sense but in so many other senses AIDS is going to do what it wants to do and ultimately you have absolutely no control over what AIDS decides to do, if you will allow the personification of our viral pal. Sure, diabetes, heart disease, liver disease, etc. can be terminal but they are in fact "manageable" in many cases and have been for years. Concluding HIV infection is "manageable" in the long term is premature at the least since we've only been "managing" it for about the past 10 years since the introduction of PIs. The odds are not yet clearly in our favor and only time will tell what long term odds are.

Again, be optimistic, plan to live, LIVE!, but don't think you dodged the bullet yet by any means.

All of my progress is thanks to HAART, and if HAART fails, I'm in serious trouble. I think "death sentence" is too harsh an adjective for post-1989 AIDS, but I think "chronic" and "manageable" are WAY too sweet and syrupy to describe the obstacles that we face.

And if funding for my HAART fails, I'm also in serious trouble. I'm reminded of this every single month that I pick up my meds...and even moreso every 6 months when I have to go through the renewal process. If there is any hitch at all in the process, the flow of medicine stops immediately.

Listen, it was probably best to deal with risred1 directly via PM or to ignore his message to you. I think you've crossed the line here. I really don't think that that one needs to have his or her "ass in the hospital for months" or even be "taking meds every day" to be "qualified to speak on the matter." Risred expressed his opinion and, well, if you don't agree with it... just say so... explain why... and move on. I'm not seeing a reason to turn this into a personal attack or a need for bullying.

Thus far, this conversation has evolved quite nicely, contrary to similar threads in the past regarding what a diagnosis of HIV means to people coming at it from vastly different POVs and experiences. And I'd really like to keep this thread civil. Having to lock the thread due to flaming and such won't benefit anyone.

And if resistance develops, there's another thing to deal with. I also think they push the meds through so fast (which I'm not necessarily complaining about) that they don't know all the side effects. Yes, what will our livers look like in a few years? So, do we worry about AIDS or the meds used to treat it?

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I went back to the original posting for this thread,-----I don't like it when people say that AIDS is no longer the death sentence that it once was... sure, I know that it is said to reasure, but why even say this? What the hell is it then.. it is a life sentence that is for sure.. am I off base? I seem to get upset when I hear this or read this...-----

Just 15-20 years ago, there wasn't much one could do about ones infection. As long term survivors have reflected on these pages, those days were difficult at best.

I guess the point I'm working to project is that today there is a level of understanding of the virus and resulting treatment options are sufficient to change one perception from AIDS is a death sentence to AIDS can be "managed", or maybe better stated, Aids can be to differing degrees suppressed for many successfully, but not for all.

If you one of the group where treatment is effective and tolerated, then it would be reasonable for that person to conclude that their condition is "manageable".

If you are of the group that is struggling with resistance, poor immune response, coverage issues, OI's, intolerable side effects, I can understand the idea that manageability would be an inappropriate term.

Traveltramp seem to be stating his discomfort the the notion that the shift from Aids is a death Sentence to what doctors told me at initial infection that the condition is largely manageable akin to what diabetics have to do, which is what my GP and Specialist both state, continue to state and reinforce.

My initial thoughts being that reality has changed in the world of AIDS because of improvements in treatment and treatment options and increase of scientific understanding of the virus. That it is a result of these changes that move the needle of perception from death sentence, to, for those with access to treatment, something else. Articulating what that something else is unfortunately largely a personal issue, something difficult to assay for the community as a whole. But none the less, when dealing with the larger collective world of HIV infection in the West, I belive justified.

While I was preparing to add to my commentary on this thread I happened to get a good look at Magic Johnson in an advertisement for Kaletra. Back when i was first diagnosed, I looked to Magic Johnson to help frame my perspective and the possibilities of life with HIV infection. One of the reasons i could not participate in this forum back then was the rather depressing issues that are par for the day here on the forum board. I was looking for hope, but it is often hard to be optimistic when surrounded by bad news. But as I adjust to being POZ and as i learn about the disease and commit myself to living as full a life as I can, I was able to contribute to these forums without being tormented by thoughts of what lie ahead. I have even stated in the treatment forum that there seemed to be an overwhelming trend to just negative commentary about treatment with no balancing opinions from those who are doing well on treatment.

I understand the nature of the forum is to be a place where we can express ourselves, vent, cry, ask for help and complain. And I do believe that those doing well on treatment are fully aware as to not wanting to state as much in deference to those who are not doing so well. Unfortunately this can create a bit of a class war between those who are doing well and those who are not. But without that balance between these two groups, one can be easily swept up with the negative outlook on what life with HIV will or can be.

With all due respect to those who are not doing well, I can't help but "feel your pain". But also I must push on with my own efforts to look to the future and the possibilities of that future. If my style of presentation is overtly intellectual, dry, lacking in empathy, I hope you can see through that. My nature is one of hopefulness and possibilities and options. And I can only try to reinforce for others that may want to feel the same way, that sense of awe in the adventure of life and that one can live as successfully with HIV as Magic Johnson.

I heard one woman describe living with HIV and taking medication in an interesting way that has stuck with me. She didn't call it a manageable condition. She didn't call it a death sentence. She described it as "lifelong chemotherapy." When I think of the term chemotherapy, I think of a process that is harsh, loaded with side effects, but limited in terms of time. For example, if someone has cancer and undergoes chemotherapy treatments, he may lose his hair, vomit, suffer bouts diarrhea, etc.; but with luck, the cancer could go into remission and treatments would cease. Not so with HIV. This is lifelong. The virus demands constant monitoring and treatment ... forever. There is the potential for decades of regular doctors visits, pills and bills. For me, it helped me get a sense of the severity of the situation without sounding too "you're going to die". As I move forward and learn more, I'll hope for the best, prepare for the worst and be pretty damn happy if I land somewhere in the middle. Anyways, just my thoughts.

I understand the nature of the forum is to be a place where we can express ourselves, vent, cry, ask for help and complain. And I do believe that those doing well on treatment are fully aware as to not wanting to state as much in deference to those who are not doing so well. Unfortunately this can create a bit of a class war between those who are doing well and those who are not. But without that balance between these two groups, one can be easily swept up with the negative outlook on what life with HIV will or can be.

With all due respect to those who are not doing well, I can't help but "feel your pain". But also I must push on with my own efforts to look to the future and the possibilities of that future. If my style of presentation is overtly intellectual, dry, lacking in empathy, I hope you can see through that. My nature is one of hopefulness and possibilities and options. And I can only try to reinforce for others that may want to feel the same way, that sense of awe in the adventure of life and that one can live as successfully with HIV as Magic Johnson.

Very well. For the record, I am doing just smashing on my regimen.

Except that it has turned my doo-doo into voodoo, has made me completely reliant on the government for continued life and dwindled my once sweet little cushion of savings to non-existance...rendering me completely unable to enjoy any sort of luxuries - from dining out to affording bottles and bottles of supps fromt he NY Buyer's Club. (I've been DYING to ask how the heck pozzies afford all that stuff! Must be nice.)

Still..I remain alive and kicking, with a smile on my face and (hopefully) a little bit of magic left in my own johnson.

that sense of awe in the adventure of life and that one can live as successfully with HIV as Magic Johnson.

...and two or three hundred million dollars.

The chicken or the egg, and the glass half full or empty questions about HIV will persist with each new infected person that decides to register at AIDSMeds. Comforting words will come from some and discounting lectures from others. The personal reality of AIDS will differ from person to person and situation to situation. Someone with no insurance is bound to live a different existence from those with healthcare. The dirt poor African American might have a different take on da aids than his brother Magic might have. Research is great, but as we've seen recently it doesn't always answer our prayers. Scientists are natural sceptics.

The chicken or the egg, and the glass half full or empty questions about HIV will persist with each new infected person that decides to register at AIDSMeds. Comforting words will come from some and discounting lectures from others. The personal reality of AIDS will differ from person to person and situation to situation. Someone with no insurance is bound to live a different existence from those with healthcare. The dirt poor African American might have a different take on da aids than his brother Magic might have. Research is great, but as we've seen recently it doesn't always answer our prayers. Scientists are natural sceptics.

That said, the basic reality of HIV is take your meds or it is 1985.

That pretty much sums it up. Well said!

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"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it." Nelson Mandela

The personal reality of AIDS will differ from person to person and situation to situation.

Couldn't agree more.

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AIDS is certainly what you make of it in one sense but in so many other senses AIDS is going to do what it wants to do and ultimately you have absolutely no control over what AIDS decides to do, if you will allow the personification of our viral pal. Sure, diabetes, heart disease, liver disease, etc. can be terminal but they are in fact "manageable" in many cases and have been for years. Concluding HIV infection is "manageable" in the long term is premature at the least since we've only been "managing" it for about the past 10 years since the introduction of PIs. The odds are not yet clearly in our favor and only time will tell what long term odds are.

I respect your opinion, but I disagree with some of this.

Heart disease is the #1 killer in the US. All the stents and bypass and medications may make it manageable for some, but huge numbers of people still suffer from it and die suddenly, early and tragically. That’s not very manageable in terms of how I view the word.

Liver disease if you have a controllable form of hepatitis may be manageable for some. But for scores of people on waiting lists for livers, have chronic jaundice, fatigue, pain, cirrhosis, fatty liver and dealing with other debilitating effects from hepatitis, (many of their medications are no walk in the park either), etc. and they may or may not think it is manageable – as is their right.

Diabetes may seem like the poster child for the term “manageable,” and with treatment it appears so for many. But there are countless numbers of people who suffer blindness, excruciating neuropathy, organ failure, slow wound healing, life threatening infections, just to name a few. Doesn’t sound manageable to me.

I think society falsely views some diseases as mostly “manageable for all” because of high profile faces. Like heart disease is manageable because they see Regis Philbin and David Letterman. Or Liver diseases is manageable because they see Pamela Anderson or Naomi Judd. And Diabetes is manageable because the see Mary Tyler Moore and Patti Labelle. Or HIV is manageable because of Andy Bell, Andrew Sullivan, Jim J. Bullock, Rudy Galindo or Magic Johnson. No one sees their private struggles, or the struggles of those who are not celebrities. Some it is manageable. Others it is most certainly not.

And with all these diseases our f-ed up healthcare system is a major obstacle as to whether they can access treatments so that it is more “manageable” for some, and definitely not for others. This is a crisis for countless people across the US and the world for many diseases.

The meds for many diseases also have worries of long terms side-effects that may or may not pop up that are pretty bad for some drugs. As we see on the news it seems every other week some new seemingly long-term problem arises for a med used to treat a “manageable” disease.

With HIV and the term I personally feel it is manageable for some people (based on my personal experience and those of people I know), and it is most definitely not for others (based on others I know). That’s my conclusion. And fortunes can change for either end based on advancements, unforeseen complications – an array of issues positive and negative. The term manageable may have a set definition, but it is interpreted very different for different people and always will be IMHO. To use the word as an all encompassing descriptor for any disease seems reckless to me personally. There are many shades of grey.

I’d never call my meds “chemotherapy” because I’ve seen my grandmother on chemo and it was not even close to the worst sides I've experienced (the nausea bouts when i was on Kaletra). But others suffer from meds just as bad as cancer chemo, so they view it as such as is their right. It’s all complicated.

This issue has been debated on these forums ad naueseaum and people are going to see things one way, and others are going to see another. There’s never going to be consensus on this in my opinion I also think words are so charged for some that it just divides and causes resentment – results in nothing conducive or beneficial. As always everyone has a right to their opinion, and while I may not agree with some people’s feeling about charged words, I’ve learned to respect it and they have every right to view things as they see fit – as is my right also.

Peace!

Logged

"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

I really don't think that one needs to have his or her "ass in the hospital for months" or even be "taking meds every day" to be "qualified to speak on the matter."

I have to say that I really disagree with this opinion.

IF someone has not been on meds, how has their life actually, really been affected? Sure there's a mental/emotional component; but no real change has happened in their life. (ie No action = no change) If someone has had no side effects from the meds or HIV itself, they have no experience for a basis of any opinion. (ie No experience = no knowledge)

I understand that finding out your poz status is a dramatic point in anyone's life. However, at that point (unless you're finding out due to illness or hospitalization) nothing in your life has actually changed (except your knowledge) from the days or weeks before. Someone who has not taken meds, not had side effects, not been hospitalized, etc., who, in effect, is still living the exact same life as before their diagnosis, has no basis for making any statements about what living with AIDS/HIV is like. Until HIV or the meds affect someone, there is no experience to make any comment except to say that you haven't been affected.

For example, if the doc tells me tomorrow that I have cancer, could I then go to a cancer support site and make comments on how easy it is to live with cancer? No way! My life wouldn't have been affected (no change, no experience) to have a valid informed opinion one way or the other. I would imagine that someone, at that cancer site, going through chemo and radiation would not appreciate hearing my ignorant (ie un-experienced, un-educated) opinion and just might be a tad offended.

Another example could be me, as a male, commenting on female-only issues. I have no experience with pregnancy, abortion, rape, menstrual cycles, etc. to make any enlightening comments. (even here at aidsmeds, there is a woman's forum that I cannot post in, as I don't have the required "experience" in life to be allowed to comment on those issues. Yes, it is discriminatory; but it allows those members to have a better discussion on "their" issues. I don't have any knowledge on those subjects and really shouldn't be butting in anyway.)

I often wonder just why some people visit this site. I can understand someone who was just diagnosed. I can understand someone having health/life issues with meds, HIV, etc. I can even understand just stopping by periodically to check on treatment/side effect issues. What I can't understand is the rationale for those who have been diagnosed "HIV poz" (not diagnosed "AIDS"), but aren't having health problems, or aren't on meds. To those people, I would say, "Go live life! You'll know when you have AIDS; and when it becomes "unmanageable" for whatever reason, this site will still be here for you then."

I just don't think that someone who hasn't been sick, hasn't been hospitalized, or hasn't even gone onto meds should be offering their opinion about whether AIDS is manageable or not. They aren't qualified or experienced in the matter to give informed advice or an opinion. I could go as far as to say, that just being HIV+ does not give anyone the credentials to speak on what it's like to have AIDS (not even the doctors who treat us). I think the only people who can say what having AIDS is like are the people with AIDS.

I also have to disagree with statements like "Life is a death sentence". Life is a wonderful thing to enjoy - it ends with death. Living in the US, with decent health and habits, I should be able to live to 70 (at least! my great-grandparents lived to their late nineties; and my grandmother just turned 90 this summer and is in excellent health - she even still drives); instead AIDS nearly killed me at 34, 36 and again at 38. (and it DID kill my previous partner when he was only 29) Now at 45, I'm doing better, but I definitely expect HIV/AIDS to be the death of me. As a courier/driver, I was involved in over 20 car accidents (none my fault), and I've been nearly struck by lightning 3 times (within 15 ft). The odds are in favor of me dying, not from one of these "one in a million" odd incidents (I already beat those odds! ), but from a complication of having AIDS; and for it to happen sooner than the average life expectancy.

My current partner and I have this discussion/argument once in a while. I believe that saying "life could end for anyone at any time" (ie bus or car wreck) is a strange way to look at life. I believe that I'm going to wake up every morning, and live through every day. If I thought a bus was going to get me, I'd never step outside the door. (and I've been there - when I was very sick and quite worried about germs. It really was NO life I was living then; but that's another story)

Using these kinds of statements comparing life to a death sentence or a transitory situation (which it is NOT for most people), denigrates and belittles the problems/sickness/struggles that are affecting my life and that will (more than likely) cause it to end sooner than the average person not afflicted with this disease. My life IS different from normal because of this disease. Trying to make my life sound normal (because everyone is going to die anyway) just shrugs away all the real issues and concerns I have now, living a much more difficult life than normal, because of this disease. Please don't marginalize the seriousness of my sickness, thank you. I have to live with it's complications every day and it is very serious to me and my well being.

Don't misunderstand me. I don't want pity, nor am I a "victim". The reality of having this illness (and the shortened lifespan) forced me to re-evaluate things and make different plans for life than I would have made if I had not been infected. Having come to some sort of peace with this situation, I don't think a person who has never been in this position, or hasn't started down this road, has the experience or knowledge to comment on what this situation is like.

In closing, I feel compelled to say something about myself. I really am a happy guy. Really, I am. LOL I have considered every day since my bday of Mar 14 in 1996, when I didn't die from PCP (two yr after my partner passed away), to be an EXTRA day. Every one of these EXTRA days, I've tried to find something of enjoyment to show my gratefulness at still being alive. Even at the toughest times, I've been able to say that many days were GREAT just because I didn't puke. Why I'm overjoyed to be coming up on my 46th bday!! I would have never thought I'd be happy to be getting older. LOL (Next time you bitch about getting older, just remember you could be dead. Boy is that an attitude changer. ) I don't think that my attitudes about how HIV/AIDS has affected/scarred me emotionally/physically/mentally are depressive/pessimistic, I just think they are realistic. I prefer to tackle this problem in my life, rather than put an overly optimistic slant on the seriousness of having HIV/AIDS. Call it "manageable" all you want; but when you eventually have to deal with it, you'll be calling it a lot of other names.

mikie(who might just be riled up because this is his 4th day with ZERO cigarettes)

And if resistance develops, there's another thing to deal with. I also think they push the meds through so fast (which I'm not necessarily complaining about) that they don't know all the side effects. Yes, what will our livers look like in a few years? So, do we worry about AIDS or the meds used to treat it?

I know I just posted that long rant, and I don't want to hijack the thread but I wanted to mention something about this too.

Back in the 80s when many people were dying quickly from AIDS, there were many activists who did a great amount of work pushing science and politics to tackle this epidemic. Thankfully, some of that science paid off because we do have meds that work so much better. Thankfully, some of the politics paid off because those meds have been "approved" and rushed to the consumer market.

The problem with the situation is the trade off for getting these better meds into the market so fast is less testing/data about the meds. For the sake of staying alive for another 10 yrs or so, I'm taking meds for which the long term effects are unknown - Basically because they've never been tested for a long term. I am the guiena pig in a continuing experiment.

I'm not complaining about the situation. Because of how things have worked out, many, many more people are alive today (including myself!); but none of these meds is a cure, so the underlying problem (HIV) is still there. The science has just been able to postpone the eventual outcome and some of the side effects of having this disease. Instead of dying in 18 months after diagnosis (as in the case of my late partner in 94); the meds now will extend that time to years (I think the current amt is around 30 yrs - which still means that a 25 yr old diagnosed today will die an earlier than normal death due to this disease).

It's not knowing these long term results that I wish people would consider before calling HIV/AIDS a "manageable" disease. It's manageable (meaning that the effects have been dampened and death is not an immediate result) for approx 25+ years; but after that, no one really knows. Maybe if we had different words or qualifiers. I could agree that HIV is "very manageable", while AIDS is "better managed", "more manageable", or "barely manageable" at the current time; but long term predictions (that weaken the difficulty/seriousness of having this disease) just should't be made until more data is known.

mikie(who will blame this rant as a side of effect of Chantix and it's unstudied long term effects. LOL)

Someone who has not taken meds, not had side effects, not been hospitalized, etc., who, in effect, is still living the exact same life as before their diagnosis, has no basis for making any statements about what living with AIDS/HIV is like. Until HIV or the meds affect someone, there is no experience to make any comment except to say that you haven't been affected.

I don't know if I agree with this entirely. There are plenty of HIV-positive people who haven't necessarily been affected physically by HIV or its complications, but have been deeply affected psychologically -- suffering stigma, discrimination, rejection, depression... even enlightenment. So to say that they're still living the exact same life may be oversimplifying things a bit. But this isn't really the point of this thread, so...

The way I read this thread, its about perceptions of what HIV infection means in this day and age. Risred1 has his perceptions, spelled them out, and has been shown different POVs by those who have been living with HIV longer and/or have experienced problems that don't jive with his take on things. This is what conversation is all about. I just don't see how denying him a voice in a discussion about the perception that "AIDS is no longer a...." benefits him or anyone else for that matter.

I looked in the eyes of death more than once, since my infection 20 years ago.Once it was PCP.Another time it was the side effects.Then it was the Sustiva that turned me into a suicidal violent freak.Or depressionNot to forget the neuropathy, nausea ( years in a row), headaches, musclepain, anemia, brainfog, loss of energy,

Death sentence... maybe not for me, manageable.. yes, but at what cost??

Right Tim... we should never forget the emotional and mental impact of a HIV+ diagnose.Even with ' a pill a day" idea, it still scares the hell out of newly infected.

To echo Queen : Who knows what I will die of? My lover died of a heartattack at age 32. He was neg and perfectly healthy... I thought.. And he was going to assist me on my deathbed.

HIV hasn't killed me yet but hell yeah , it made my life miserable and crushed many a dream. Still I walk the path and try to smile every morning.Manageable....any neg person out there wants to trade place? On one condition : take the two bathtubs of meds I took..then continue talking..

Hermie

Logged

Diagnosed in 1987 and still kickingKivexa (Epzicom),Tivicay once daily

I have AIDS and I have no intention of dying. Death has beaten down my life too many times in the last 15 years. I think it and HIV owes me one. Its killed half my family you'd think it could cut me some slack...

I'm not going to linger on the thought that I will eventually die some day. That is no way for me to live.

Its not a death sentence for me. Its a pain in the ass, no rent paying, freeloading bum of a virus I have to live with.

IF someone has not been on meds, how has their life actually, really been affected? Sure there's a mental/emotional component; but no real change has happened in their life. (ie No action = no change) If someone has had no side effects from the meds or HIV itself, they have no experience for a basis of any opinion. (ie No experience = no knowledge)

Okay, how about this? I'm afraid. I've lost many friends and buried a couple of them. Does that count for anything?

IF someone has not been on meds, how has their life actually, really been affected? Sure there's a mental/emotional component; but no real change has happened in their life. (ie No action = no change) If someone has had no side effects from the meds or HIV itself, they have no experience for a basis of any opinion. (ie No experience = no knowledge)

First -- You make many great points in this post -- but I think you are being a bit closed minded with this one section. For folks not on meds yet, or no side effects does not mean they have no experience -- it means that their experience is that of no meds yet, no side effects yet. The implication is that without suffering in some way, their is no experience or knowledge. The fact is, for me, that if I were infected in 1985 instead of 2005 (or some point after 2001 anyway), I would likely have suffered, and probably be dead and unable to post in this thread. What has changed (for me, anyway) is that I am able to take meds, yet not have had my life "change" much -- although, the mental anguish and current mental strain is a change. I know that this could change tomorrow and in no way mean to infer that someone else's real struggles and, in some cases, loss to this disease are unreal. All I can do is express MY REALITY with HIV and show empathy to others.We can't ever take this debate as a right vs. wrong -- it's great to talk and learn, but we must stop belittling and denigrating differing points of view.

Hugs,Mike(Who definitely understands the effects of quitting smoking and it's ability to "rile" one up )

I really am bewildered by the ease with which some people dismiss / overlook the psychological aspects of knowing you are living with HIV.

I look at how many of my friends have given up the fight over the years .. not because treatment was intolerable; but because of what the knowledge that they were HIV-positive was doing to their mind and how it made their approach to life so destructive.

I look around me and see how many of my acquaintances refuse to test, because they are more scared of what the knowledge will do to them than they are of the physical effects of HIV and treatment.

Almost every day, I meet fellow pozzers – most of whom have never taken medications, but certainly have had to cope with the debilitating effects of deep clinical depression induced by the struggle of coming to terms with HIV – who ask me how on earth I always manage to stay so cheerful and optimistic.

I meet other people (many of them aren’t even HIV-positive) who think I must be some sort of denialist for not being riddled with depression.

The truth is that for many people, HIV is nothing like a life sentence. It is a lifetime spent on death row … just waiting.

None of that is my personal experience of HIV; but then HIV isn’t the worst thing that has happened to me. Maybe other experiences have simply equipped me to deal with things differently.

Think about the day you learned you where HIV positive. How badly did learning you where positive impact you? Did it alter your lifestyle? Did it alter the way you thought of yourself? Did it alter your life in any way negative?For majority of us it did. I think we all can agree with that.

Yeah, experiences like practically living in the hospital, watching doctors throw their hands in the air with frustration not knowing what to do to make you better, watching people you love die off around you, being unable to get out of your own sweaty, maybe vomit covered clothing ect.. is an extremely different vantage point of living with HIV. But when we start playing the game of who has got the worst story then we are just damned to listening to everyones account of how shitty life with HIV can be instead of acknowledging that it sucks for all of us.